Suppr超能文献

秘鲁利马医学生和医生对罕见疾病的了解程度。

Knowledge level of medical students and physicians about rare diseases in Lima, Peru.

作者信息

Flores Andrea, Burgos Sarah, Abarca-Barriga Hugo

机构信息

Faculty of Human Medicine, Universidad Científica del Sur, Lima, Perú.

Department of Genetic & Inborn Error of Metabolism, Instituto Nacional de Salud del Niño - Breña, Lima, Perú.

出版信息

Intractable Rare Dis Res. 2022 Nov;11(4):180-188. doi: 10.5582/irdr.2022.01079.

Abstract

Rare diseases (RDs) affect up to 8% of the world's population, and unfortunately, health professionals have a low level of knowledge regarding the impacts of RDs on the social, psychological, and economic spheres of the patients and their families; hence, RD management is inadequate, consistently empirical, and precarious. The objective of this study was to determine the knowledge level of the medical students from a non-state university and physicians from Lima, Peru of RDs through a virtual survey for an analytical cross-sectional study. A total of 338 medical students and 382 physicians were surveyed. Results showed that several of the respondents (68.1% of students and 48.7% of physicians) had heard of the term "rare disease", but only a few stated that they had received any kind of training specific to it. Of the physicians, 46.6% considered that there should be a course about RDs in medical curricula, and more than 60% considered RDs a public health problem. Most respondents prioritized the planning of a higher budget for common diseases and believe it is convenient to allocate a specific fund for RDs. More than half of the participants had a very poor knowledge level. Due to students and physicians' low level of general knowledge of RDs, it is important to raise awareness and improve their education about these pathologies because this will have beneficial effects for RD patient care.

摘要

罕见病影响着全球多达8%的人口,不幸的是,卫生专业人员对罕见病对患者及其家庭的社会、心理和经济领域的影响了解程度较低;因此,罕见病管理不足,始终停留在经验层面,且不稳定。本研究的目的是通过一项分析性横断面研究的虚拟调查,确定秘鲁利马一所非国立大学的医学生和医生对罕见病的了解程度。总共对338名医学生和382名医生进行了调查。结果显示,一些受访者(68.1%的学生和48.7%的医生)听说过“罕见病”这个术语,但只有少数人表示他们接受过任何针对罕见病的特定培训。在医生中,46.6%认为医学课程中应该有关于罕见病的课程,超过60%认为罕见病是一个公共卫生问题。大多数受访者优先考虑为常见疾病规划更高的预算,并认为为罕见病分配专项资金是合适的。超过一半的参与者知识水平非常低。由于学生和医生对罕见病的一般了解程度较低,提高他们对这些疾病的认识并改善他们的相关教育很重要,因为这将对罕见病患者的护理产生有益影响。

相似文献

1
Knowledge level of medical students and physicians about rare diseases in Lima, Peru.
Intractable Rare Dis Res. 2022 Nov;11(4):180-188. doi: 10.5582/irdr.2022.01079.
2
The Awareness of Rare Diseases Among Medical Students and Practicing Physicians in the Republic of Kazakhstan. An Exploratory Study.
Front Public Health. 2022 Apr 8;10:872648. doi: 10.3389/fpubh.2022.872648. eCollection 2022.
3
Knowledge and Attitudes of Future Healthcare Professionals Toward Rare Diseases.
Front Genet. 2021 May 28;12:639610. doi: 10.3389/fgene.2021.639610. eCollection 2021.
5
What is the awareness of rare diseases among medical students? A survey in Bulgaria.
Orphanet J Rare Dis. 2023 Jul 25;18(1):213. doi: 10.1186/s13023-023-02820-4.
6
Medical students' knowledge and opinions about rare diseases: A case study from Poland.
Intractable Rare Dis Res. 2019 Nov;8(4):252-259. doi: 10.5582/irdr.2019.01099.
8
Treating rare diseases with the cinema: Can popular movies enhance public understanding of rare diseases?
Orphanet J Rare Dis. 2022 Mar 5;17(1):117. doi: 10.1186/s13023-022-02269-x.
9
Poor education and urgent information need for emergency physicians about rare diseases in China.
Orphanet J Rare Dis. 2022 May 26;17(1):211. doi: 10.1186/s13023-022-02354-1.
10
General knowledge and opinion of future health care and non-health care professionals on rare diseases.
J Eval Clin Pract. 2015 Apr;21(2):198-201. doi: 10.1111/jep.12281. Epub 2014 Nov 3.

引用本文的文献

2
The rare disease burden: a multidimensional challenge.
Acta Biochim Pol. 2025 Jul 14;72:14777. doi: 10.3389/abp.2025.14777. eCollection 2025.
3
Caregivers' experiences and challenges of the diagnostic odyssey in Dravet syndrome.
Orphanet J Rare Dis. 2025 May 16;20(1):234. doi: 10.1186/s13023-025-03772-7.
5
Assessment of professional competencies of Peruvian physicians: A scoping review of published studies.
PLoS One. 2024 May 23;19(5):e0299465. doi: 10.1371/journal.pone.0299465. eCollection 2024.
7
What is the awareness of rare diseases among medical students? A survey in Bulgaria.
Orphanet J Rare Dis. 2023 Jul 25;18(1):213. doi: 10.1186/s13023-023-02820-4.

本文引用的文献

1
Iranian future healthcare professionals' knowledge and opinions about rare diseases: cross-sectional study.
Orphanet J Rare Dis. 2022 Sep 29;17(1):366. doi: 10.1186/s13023-022-02458-8.
2
Poor education and urgent information need for emergency physicians about rare diseases in China.
Orphanet J Rare Dis. 2022 May 26;17(1):211. doi: 10.1186/s13023-022-02354-1.
3
The Awareness of Rare Diseases Among Medical Students and Practicing Physicians in the Republic of Kazakhstan. An Exploratory Study.
Front Public Health. 2022 Apr 8;10:872648. doi: 10.3389/fpubh.2022.872648. eCollection 2022.
4
Rare Disease Registries Are Key to Evidence-Based Personalized Medicine: Highlighting the European Experience.
Front Endocrinol (Lausanne). 2022 Mar 4;13:832063. doi: 10.3389/fendo.2022.832063. eCollection 2022.
5
A guide for the diagnosis of rare and undiagnosed disease: beyond the exome.
Genome Med. 2022 Feb 28;14(1):23. doi: 10.1186/s13073-022-01026-w.
6
National Rare Diseases Registry System (NRDRS): China's first nation-wide rare diseases demographic analyses.
Orphanet J Rare Dis. 2021 Dec 18;16(1):515. doi: 10.1186/s13023-021-02130-7.
7
Knowledge and Attitudes of Future Healthcare Professionals Toward Rare Diseases.
Front Genet. 2021 May 28;12:639610. doi: 10.3389/fgene.2021.639610. eCollection 2021.
8
Rare disease awareness and perspectives of physicians in China: a questionnaire-based study.
Orphanet J Rare Dis. 2021 Apr 13;16(1):171. doi: 10.1186/s13023-021-01788-3.
9
[The lag of genetic counseling in Mexico].
Rev Med Inst Mex Seguro Soc. 2021 Feb 2;59(1):101-105. doi: 10.24875/RMIMSS.M21000058.
10
Education and information needs for physicians about rare diseases in Spain.
Orphanet J Rare Dis. 2020 Jan 17;15(1):18. doi: 10.1186/s13023-019-1285-0.

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验